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Any updates on Margs sister today?
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<blockquote data-quote="Marguerite" data-source="post: 349118" data-attributes="member: 1991"><p>OK, we're back.</p><p></p><p>J was definitely doing better this afternoon. I was the only visitor while I was there and she mostly wanted to sleep, so for a while I just held her hand. She waved hello to me when I arrived, clearly recognised me. Then she mostly sat and either closed her eyes or watched the TV (up high on the wall). The nurse had to talk to her a few times, asked her if she wanted a pillow behind her head, or to leave the towel - J was able to make a decision and indicate to leave things as they were.</p><p></p><p>When I was there on Tuesday and J had tears in her eyes, or was drooling, we had to mop it up for her. Today she was in a mostly sitting position and had a box of tissues in her lap. She could grab a tissue, mop herself and then put the tissues in a bowl on the table.</p><p></p><p>She's in the best bed, literally, in ICU. It's valued at $75,000 we've been told, and it can turn into just about anything. This way they can get her sitting up as if in an armchair, or lying down flat, or tilted tis way or tat. They can turn her around, roll her onto her side - it's amazing. And it means they don't have to move her.</p><p></p><p>They're getting her sitting up as much as they can so they can get her lungs working a bit better, they're hoping to get her off the ventilator. W isn't so sure this will be possible, she's seen the CT scans tat show that both lower lungs are "white-out" and most of her middle lobes, while her upper lobes are 'starred' with fibrotic tissue.</p><p></p><p>The biopsy results will be available by Monday, I heard one nurse say to another. But we've been told mid-week. W said tat the specialist wants to get the early results then send the tissue samples to another lab, a specialist respiratory pathologist, to make absolutely certain of the diagnosis. But for all of us, the working hypothesis is respiratory fibrosis.</p><p></p><p>The nurse tilted J's bed back a bit because as she dozed, her head was lolling and they felt this wasn't good. So they eased it back a bit (to about 60 degrees) and she seemed to doze off more soundly. So I tiptoed out - she's still on medazolam, so she won't remember I was there anyway.</p><p></p><p>I rang husband from downstairs - he'd gone to a nearby coffee shop to wait, so while I waited for him to come get me, J's daughter happened to arrive and we got talking. I'd been hoping to talk to her, the poor girl is frantic to help her mother and has been trying to insist she be moved to the major transplant hospital in inner Sydney. I wanted that too, until I saw how well they're looking after J where she is. So I reinforced this with her, that the transplant hospital is aware of J and if/wen it becomes the better place for her to be, the transfer will happen. But until then, she is better off where she is, where she doesn't even need to be moved from the bed, to get all the care she needs.</p><p></p><p>J is still being specialled, in a room on her own with banks of machines and dials, tubes everywhere and the nurse permanently stationed in the doorway at a desk, always noting her levels on the machines and coming over instantly a bell rings or the nurse sees J struggling, or fighting the ventilator. That didn't happen while I was there today.</p><p></p><p>J's daughter (and W, earlier) said that they're trying to get J off the ventilator over the next ten days. I'd love to see that but I'm not hopeful, frankly. But she definitely is stronger than she was a week ago, when we were told she was too weak for a lung biopsy. Now she's had that biopsy and seems able to do more for herself.</p><p></p><p>She's still blown up from the prednisone, very puffy. The nurse told her to keep moving her hands so she can work the fluid out of them, but I think they need to keep reminding her.</p><p></p><p>We're hoping that the provisional diagnosis is wrong, and that it's something reversible. J's daughter said she's still going to insist on a second opinion, I suspect especially once we get a diagnosis. She won't accept a death sentence for her mother. Personally, I think she needs to save the second opinion for eligibilty for transplant. I think we're going to need it.</p><p></p><p>Our main worry now, is that she has been/will be deteriorating fast, so fast that she will be too weak for transplant by the time they put her on the list. The current improvement has given us a little hope.</p><p></p><p>Thanks for caring, everyone.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 349118, member: 1991"] OK, we're back. J was definitely doing better this afternoon. I was the only visitor while I was there and she mostly wanted to sleep, so for a while I just held her hand. She waved hello to me when I arrived, clearly recognised me. Then she mostly sat and either closed her eyes or watched the TV (up high on the wall). The nurse had to talk to her a few times, asked her if she wanted a pillow behind her head, or to leave the towel - J was able to make a decision and indicate to leave things as they were. When I was there on Tuesday and J had tears in her eyes, or was drooling, we had to mop it up for her. Today she was in a mostly sitting position and had a box of tissues in her lap. She could grab a tissue, mop herself and then put the tissues in a bowl on the table. She's in the best bed, literally, in ICU. It's valued at $75,000 we've been told, and it can turn into just about anything. This way they can get her sitting up as if in an armchair, or lying down flat, or tilted tis way or tat. They can turn her around, roll her onto her side - it's amazing. And it means they don't have to move her. They're getting her sitting up as much as they can so they can get her lungs working a bit better, they're hoping to get her off the ventilator. W isn't so sure this will be possible, she's seen the CT scans tat show that both lower lungs are "white-out" and most of her middle lobes, while her upper lobes are 'starred' with fibrotic tissue. The biopsy results will be available by Monday, I heard one nurse say to another. But we've been told mid-week. W said tat the specialist wants to get the early results then send the tissue samples to another lab, a specialist respiratory pathologist, to make absolutely certain of the diagnosis. But for all of us, the working hypothesis is respiratory fibrosis. The nurse tilted J's bed back a bit because as she dozed, her head was lolling and they felt this wasn't good. So they eased it back a bit (to about 60 degrees) and she seemed to doze off more soundly. So I tiptoed out - she's still on medazolam, so she won't remember I was there anyway. I rang husband from downstairs - he'd gone to a nearby coffee shop to wait, so while I waited for him to come get me, J's daughter happened to arrive and we got talking. I'd been hoping to talk to her, the poor girl is frantic to help her mother and has been trying to insist she be moved to the major transplant hospital in inner Sydney. I wanted that too, until I saw how well they're looking after J where she is. So I reinforced this with her, that the transplant hospital is aware of J and if/wen it becomes the better place for her to be, the transfer will happen. But until then, she is better off where she is, where she doesn't even need to be moved from the bed, to get all the care she needs. J is still being specialled, in a room on her own with banks of machines and dials, tubes everywhere and the nurse permanently stationed in the doorway at a desk, always noting her levels on the machines and coming over instantly a bell rings or the nurse sees J struggling, or fighting the ventilator. That didn't happen while I was there today. J's daughter (and W, earlier) said that they're trying to get J off the ventilator over the next ten days. I'd love to see that but I'm not hopeful, frankly. But she definitely is stronger than she was a week ago, when we were told she was too weak for a lung biopsy. Now she's had that biopsy and seems able to do more for herself. She's still blown up from the prednisone, very puffy. The nurse told her to keep moving her hands so she can work the fluid out of them, but I think they need to keep reminding her. We're hoping that the provisional diagnosis is wrong, and that it's something reversible. J's daughter said she's still going to insist on a second opinion, I suspect especially once we get a diagnosis. She won't accept a death sentence for her mother. Personally, I think she needs to save the second opinion for eligibilty for transplant. I think we're going to need it. Our main worry now, is that she has been/will be deteriorating fast, so fast that she will be too weak for transplant by the time they put her on the list. The current improvement has given us a little hope. Thanks for caring, everyone. Marg [/QUOTE]
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